Decisions around health care are some of the most complex, challenging decisions for all people to make. This is especially true for people with disabilities. People with disabilities may require more frequent and intensive interactions with the health care system either because of their disability or co-occuring conditions that require regular interactions with health care providers on a planned or emergency basis. Supported decision-making offers a way for people with disabilities to take increased ownership over their health care decision-making. To take advantage of the model we recommend in-depth, advanced planning by individuals and their supporters.
To make SDM work well in a health care context, remember these three strategies:
Tools. Planning. Education.
By using tools like a health care proxy and release of information, planning in advance when for both a planned meeting and for the unexpected, and educating health care providers about SDM, people with disabilities can successfully use SDM to make complex health care decisions.
Health Care Proxy
Typically individuals with disabilities and supporters are most concerned about how SDM will work in an emergency or crisis situation. A health care proxy is an essential tool for individuals with disabilities to prepare for a crisis in advance. A health care proxy is someone who a person chooses to make health care decisions for him or her if something happens to the person and he or she cannot make decisions for him or herself. More information about health care proxies and SDM is available here.
We recommend individuals using SDM select a health care proxy so that there is a plan in place in case of an emergency. This way the person with the disability can choose and knows who will be making decisions for him or her if there is an emergency. Having a health care proxy also provides clarity to health care provider about what would happen in a crisis.
Designation of Health Care Proxy in advance is consistent with choice and self direction.
Health care proxies are almost always supporters. Typically people choose one of their supporters as their health care proxy. Unless there is an unusual circumstance, choosing a supporter as a health care proxy is a best practice for a number of reasons. One, the supporter knows the person with the disability well and would likely already be someone known to health care providers. Two, the supporter will have a strong understanding of the individual’s will and preferences. The health care proxy and the individual with the disability should have extensive conversations in advance about what the individual’s wishes are in a crisis situation. Discussions around the use of medications (particularly psychiatric medications), health care interventions at the end of life, and other issues specific to the individuals health, such as choices that may come up related to a a particular existing condition like diabetes or dementia. A resource called Conversation Starter Kits can help facilitate difficult conversations around end of life choices and other complex health care decisions.
Create a communication plan. If there are multiple supporters, the supporters and individual should develop a plan for communication among supporters if the health care proxy goes into effect. Consider the following issues:
- Does the individual with the disability want the health care proxy to tell the other supporters if the health care proxy goes into effect? What timeline is imagined for this? Do the supporters all have ways to contact each other?
- Does the individual with the disability want the health care proxy to consult any other supporters on decision-making? How will this communication take place? How can the other supporters assist the health care proxy if they are being consulted? What will happen if there is a conflict or difference of opinion among the supporters? Does everyone involved understand that the final decision will be made by the health care proxy?
- Does the individual with the disability want the health care proxy to communicate with other supporters after decisions are made? What is the expectation concerning time frames?
A discussion ahead of time can make everyone involved clear about their roles and minimize confusion about the process if the health care proxy is used.
Be sure to share the health care proxy form with your providers. We recommend sharing the health care proxy form with primary care and other regular health care providers. It is also a best practice for all supporters and the individual with the disability to have a copy of the health care proxy form. Particularly if there was a different health care proxy in place previously or a guardianship that has recently been terminated it is essential that those involved have the most up-to-date form.
Release of Information
Having access to information about a health care decision is essential for a supporter to assist a person with making a decision. Health care information is protected by strict confidentiality laws. The Health Insurance Portability and Accountability Act (HIPAA) is a federal law that prevents your health care providers from sharing information about someone without consent. There are also state laws that protect confidentiality of health information. The individual with the disability using SDM must sign a release of information if he or she wants a supporter to access protected health information. More information about releases of information is available on our Getting Started page.
Is a release needed and for what? Signing a release for health care information is a big decision. Before allowing supporters complete access to protected health information, the individual should identify the scope of the release that is necessary. The individual with the disability should have a conversation with supporters about the scope of support the person will be getting around health care choices so as to determine what releases are needed:
- Which supporters will be helping with health care decision-making? All supporters? One supporter?
- Will supporters be helping with health care decision-making in one particular area (for example around psychiatric issues only or dental issues only?), or will supporters help with all types of health care decisions?
- How much support does the individual need around health care decisions? For example, does he or she need supporters to attend appointments? To have independent conversations with providers? To access medical records?
- In a crisis, what supporters should have what information?
- How many health care providers does the individual have a long-standing relationship with?
Once the individual has discussed these and related questions, the individual will be able to decide which supporters need access to which information. The next step is to contact relevant health care providers to execute a proper release. Many health care providers require a particular form be executed. It may also be possible to use a standard HIPAA compliant release. Links to releases compliant with HIPAA are available on our Getting Started page.
Copies of signed releases of information should be shared with appropriate providers. It may also be helpful to attach copies of releases to any SDM agreements.
Many providers will allow supporters to attend medical appointments without a signed release. However, rather than rely on this practice, it is better to obtain any necessary releases in advance to avoid problems later. In an emergency or crisis the usual provider may not be available and treatment might be provided by someone else in the practice who is unfamiliar with SDM. Having a release of information already in place will allow communication between the provider and supporter in an emergency or crisis, a time when the supporter’s assistance is likely essential.
Preparation before appointments: a step-by-step approach
A successful medical appointment begins before the person with the disability steps foot in the medical office. It is essential to do as much advanced planning as possible before a medical appointment takes place. While planning for a crisis is not possible in the same way, having completed this process for a planned medical appointment will provide a foundation of support for a crisis.
A comprehensive conversation between the individuals and supporters about the appointment maximizes success.
1. Discuss the purpose of the medical appointment. The person with the disability should understand why he or she is having this appointment and who it is with. Is it a regular check up with a primary care provider? Is it an appointment to discuss medications? Is it an appointment to see whether further interventions (like surgery, dental work, or a new medication) is needed? Is the provider someone the person has met before? Someone who is a specialist or a generalist?
The individual should also discuss with supporters the scope and limits of the medical appointment: what can be accomplished and what cannot. It is important that expectations are clear, particularly given that a health care provider might have limited time to engage on certain topics or might be focused on obtaining consent for a particular issue. A second appointment might be needed if there are topics that extend beyond the scope of the appointment.
2. Identify what information the individual needs for the appointment be a success. Supporters should explore the specific concerns, questions, fears, and anxieties the person with the disability has about the appointment. Questions to consider include:
- Does the individual want any information ahead of time about the medical issues that will be discussed?
- Are there videos of examinations that the person could watch to make him or her more comfortable with what the health care provider might be doing at the appointment?
- Does the individual have any friends who have been to a similar type of appointment or dealt with a similar medical issue before?
- What accommodations does the individual need to meaningfully participate in the appointment? Do any of these need to be communicated in advance? For example, if the individual needs information presented in a particular format, can that be arranged in advance if a decision will need to be made at the appointment? If not, can the decision be delayed until the individual has an opportunity to review the information in an accessible format?
After providing education on these issues, supporters should assess what aspects of the appointment remain unclear to the individual and try to address any remaining issues.
3. Determine who will attend the appointment and what everyone is responsible for during the appointment. Supporters and the individual should discuss if a supporter will attend the medical appointment. If a supporter will be attending, which one? Continuity can be very helpful when making medical decisions so continuity of supporters is an important factor to consider particularly if follow-up appointments are likely. If one supporter has an existing relationship or experience with a provider, that relationship could help make a medical provider more open to SDM if it is a new concept for the provider. Also consider whether a supporter might participate by phone if he or she is unable to attend in person. Finally, the individual should decide what portions of the medical appointment the supporter should attend. For example, the supporter may not need to be present for a physical examination, but could be there for the discussion after.
4. Put issues in writing before the appointment. Together, supporters and the person with the disability should create a list with the individual’s concerns and/or questions about issues likely to come up at the appointment. The individual or supporter should bring this document to the appointment.
5. Discuss what information needs to be collected in advance and brought to the appointment. For example, will the health care provider have access to all the necessary medical history? If this is a meeting about medication management, is there information about what side effects the individual has been experiencing that can be gathered in advance to present to the health care provider? For a meeting that might result in a decision to go to a specialist, is there someone that the individual has in mind or who has been recommended? Should work be done to find out about possible specialists or will the health care provider offer recommendations? Supporters and the individual should decide who will collect and organize this information before the appointment.
6. Determine what role the individual and the supporter will play at the appointment. Questions to consider:
- If a supporter is attending the meeting, will that supporter communicate with other supporters after the meeting? Can that supporter contact the health care provider after the meeting with follow-up questions, and are releases in place to allow this communication?
- Who will speak to the health care provider? Who will ask questions of the provider?
- Who will record what occurs in the appointment? Who will record what items need follow-up and what questions are unresolved?
- If the individual needs accommodations (e.g. more time to respond to a question, information presented in a particular format), who will communicate that need in the appointment (or in advance)?
Preparation of health care providers before appointments
To ensure that the provider respects the decisions being made, health care providers should have information about supported decision-making in advance of an appointment. The individual with the disability should be the person educating the provider about supported decision-making, with assistance from supporters as needed. This communicates important information to the health care provider — if the supporters speak for the person with the disability, that devalues the individual’s voice and undermines the values of supported decision-making. Individuals with disabilities and supporters should work to find ways to educate the provider about SDM in a way that maximizes the autonomy of the individual.
Consider providing a copy of the supported decision-making agreement, health care proxy, and any releases of information in advance of an appointment.
We recommend that the individual and his or her supporters meet to decide how to discuss SDM with the provider. Most offices will not have a specific practice or policy for SDM and are likely unfamiliar with the concept. The process will be individualized, and the following questions can guide the discussion:
- Does the provider have any experience with SDM? Do you know if it is positive or negative?
- When will you explain SDM to the provider? Before the appointment? Is it possible to have a phone call or mail or email written materials?
- Who will explain the concept of SDM? How will you explain the role of the supporter? How will you communicate the values of SDM?
- If you choose to provide written materials, what will you provide? (SDM Agreement, Health care Proxy Form, other background materials on SDM. Many educational resources are available in the SDM Resource Library. )
- If the person previously had a guardianship, how will you communicate this change to the provider? What can you do to ensure the provider does not look to the supporter for final authority, formally or informally?
- If the office requires a release to be signed for the supporter to be present, can you do this in advance?
Health care professionals, particularly mental health professionals, have long been interested in the process of decision-making and the ability of people with disabilities to make treatment decisions. In recent years there has been an increased interest in using shared decision-making in the context of mental health treatment.
Shared decision making is a distinct concept from supported decision-making, though the terms are frequently confused. Typically, shared decision-making involves a treating health care provider, patient, and perhaps others making a decision based on shared information that is agreed upon by all parties. Shared decision-making promotes the active engagement of individuals with their health care providers. It is most often used when there is a more than one treatment option available.
It is essential for people using SDM and health care providers to understand the distinction between shared and supported decision-making.
Shared decision-making is a method to ensure understanding, promote informed choice, and engage the person in health care decisions. Supported decision-making, on the other hand, goes more deeply to the very concept of capacity or competence to make decisions. Shared decision making does not address the ability of the person to engage in decision-making. Supported decision-making does.
Because shared decision-making is often confused with supported decision-making, you should make sure that health care providers you are working with understand that you are using the supported decision-making model. This may require some education.